Alok Sharma MP (Reading West) introduced a Westminster Hall debate on fibromyalgia on 1st July 2015 initiated through contact with the Reading fibromyalgia support group.

The debate was attended by only 7 MPs and a junior minister from the Department for Business, Innovation and Skills George Freeman MP. We are pleased that there were representatives from all over the UK. There were 4 members of the public attending, including two representatives from Fibromyalgia Action UK. The relatively low attendance was in part due to the relative lack of notice that was given for the meeting but we hope that a future event will allow us to increase the attendance

However we know from social media activity that there was a good interest from the fibro community across the country with many people watching the debate on Parliament TV live and afterwards as well. The debate lasted 30 minutes, started by the debate organiser, Alok Sharma MP, who gave a 10 minute opening speech.

]]>e.vine2@googlemail.com (Ella Vine)FeaturedGeneral InformationThu, 30 Jul 2015 18:19:54 +0000Mum and her little son shave their heads in support of FMA UK http://www.fmauk.org/latest-news-mainmenu-2/articles-1/38-fundraising-1/1003-mum-and-a-little-son-shave-their-heads-in-support-of-fma-uk
http://www.fmauk.org/latest-news-mainmenu-2/articles-1/38-fundraising-1/1003-mum-and-a-little-son-shave-their-heads-in-support-of-fma-uk

Katie Matthews has shaven head together with her little son to raise awareness and funds for FMA’s UK work.

Katie told us: ‘’If you have or know someone with fibromyalgia you'll understand just how nasty the illness is. Unfortunately it's not always agreed with. I have seen a GP only two weeks ago who insisted I couldn't possibly hurt so much..... Let me tell you, this is not a life anyone would choose. I'm 30 next month and feel three times that. I use a crutch and have now got a wheelchair so I can manage days out with my boys.

Jade Pierce will be walking from Bristol to North Wales to raise awareness and funds for FMA UK. Jade said: ''I'm going to be walking from Bristol to Dolgellau, North Wales - my home town, this September! Over 150 miles and 14 days camping, this is a mega challenge for anyone let alone for me who suffers with this awful invisible illness

Pam Stewart the chair of FMA UK has always loved walking as a way of keeping fit and getting out and about. Having done a few events in the past its no surprise that she considered doing this event.

Pam said: Well, I thought walking a marathon can’t be that difficult! The entrance money went towards helping street children and I could raise sponsorship for FMA UK. It would be a lovely day out walking along the Thames from Windsor to Cookham with a lunch provided. A new challenge for me.

I did a trial walk last month of about 20 miles and that showed me where the blisters were going to be. I bought some new heel inserts for my boots and had plasters and Vaseline ready (and some pain killers just in case.)

The European Patients Forum are interested if a lack of integrated care for patients may be impacting of the quality of their care therefore affecting quality of life.

It states 'Fragmentation in the health and social care system is constantly identified by patients with chronic diseases as a major obstacle in the way of good quality care and quality of life. (EPF paper on chronic diseases, 2012) The result of fragmentation is that patients need to actively “fight the system” just to get the services they are entitled to'

‘’I developed Fibro in 2002, when I was 21, following a whiplash injury, infection and period of stress. It took me some years to get diagnosed and then longer to get any decent treatment, during which time I became disabled and stopped working. Eventually, following private treatment with a physiotherapist, a myofascial release massage therapist and medications from the late Prof John Davies, I got my Fibro under control.

I had been running a local support group and then got involved in supporting the PolkaDotGals Campaign, through which I got to know another young support group leader, Emma Levick. At that time, there seemed to be little focus in the UK on easy access to evidence based information about Fibro - with many sources of online information, including the NHS, being outdated - or on having a positive attitude that treatments could make a difference, both of which became key principles for FibroAction.

Sunday 12th July saw our 6 runners take part in the British 10k in London along with thousands of others. A huge thank you to Doug, Paul, Polly, Rosie John and Kirstie, who all finished in good times despite the jams passing slower runners and walkers.

The trustees of FibroAction and FMA UK are proud to announce the merger of the two organisations in to a new entity, Fibromyalgia Action UK, as of 1st July this year. It will combine both charities’ expertise, experience and resources to better serve people affected by fibromyalgia.

Both charities have the same mission and aims, both provide similar services benefiting the same group of people nationally and working as one organisation will enhance this work.

The merger will take place on the 1st of July 2015 and the new organisation will be called Fibromyalgia Action UK (FMA UK). The name change is subject to regulatory approval.

All services will remain the same – there will be no change in any of them and all will continue as normal without any break or delay.

Ella Vine, Chief Executive of FibroAction said: ‘This is a very exciting time for the charities and for all of us in the wider fibromyalgia field. This is a very positive step in the right direction. We are all delighted about it. The charities have a national scope, undertake very similar work, serve the same population, have the same group of supporters and the same aims. It will therefore be good to combine our resources to ensure that people affected by fibromyalgia in the UK receive the best possible support and that our voice is stronger and heard by policy makers. We are thrilled about it.”

Pam Stewart, Chair of FMA UK said: “The trustees of FMA UK are delighted for FibroAction to be joining with the trustees of FMA UK to be able to move forward together with their support for people with fibromyalgia. This should allow for an even more proactive role in ensuring the best treatment options for fibromyalgia. The new board will have more in depth and an increased range of skills available, which will bring benefit to the fibro community and our shared objectives. ”

We are delighted to announce that this year’s conference, in aid of World Scleroderma Day, will be a joint event held by The Scleroderma Society and the RSA on Saturday 20th June, in Manchester.

This year’s theme, UNVEILED, aims to reveal treatments and topics to help those with the conditions, share information, hear about the latest news and research into the conditions, learn some self management tips and techniques and experience some treatments whilst enjoying yourselves by catching up with old friends …and making new ones.

Please see the press release from the European Medicines Agency on Ibuprofen. The full press release is available here.

Review confirms small cardiovascular risk with daily doses at or above 2,400 mg

The CMDh1 has endorsed by consensus updated advice on the use of high-dose ibuprofen. This follows a review carried out by EMA’s Pharmacovigilance Risk Assessment Committee (PRAC), which confirmed a small increased risk of cardiovascular problems, such as heart attacks and strokes, in patients taking high doses of ibuprofen (at or above 2,400 mg per day).

The review clarifies that the risk with high-dose ibuprofen is similar to the risk seen with some other non-steroidal anti-inflammatory drugs (NSAIDs), including COX-2 inhibitors and diclofenac.

'Carers Allowance can be claimed by the Carer of someone who is in receipt of DLA middle/high rate care or PIP standard/enhanced daily living component or AA either rate. There are limitations in how much the Carer can earn and still get the Allowance and the Carer usually has to be under 65 - for details please look on line or contact Janet Horton on the Benefits Helpline between 10am and 12 noon on Monday and Friday on 0844 887 2450'